Here’s is the third (and last) part of TriAgain’s story. If you skimmed the others, today's is the one to read closely! This is lessons learned. I find these quite interesting, so I’m just going to let him tell you what worked for him and either didn’t work or made his knee pain worse, and get out of the way!
The Bad
* Full-body-weight, leg-muscle strengthening exercises: too much load and frequency, so exceeded my envelope of function [i.e., capacity of the knee to handle the load]
* Anti-inflammatories: a short-term solution only and can cause long-term problems
* Stairs
* Knee taping
* Crouching, squatting, bending forward too much
* Icing: I had no swelling, but iced to relieve the pain. I was doing this a lot before the real chronic pain struck. I’ve since read that icing can cause CRPS
* Glucosamine (supplements): did nothing
* Iron (supplements): did nothing
* Body awareness: one thing triathlon can do is make you hyper-aware and paranoid of every little ache and pain in your body. You can focus on things too much, until they do become a problem, or become harder to solve.
The Good
* Becoming OCD about monitoring your knees, figuring out what makes them worse, what makes them better, and sticking to that, while gradually edging up your activity levels. For many, this will mean forget triathlon for the foreseeable future
* Walking
* Stretching
* TENS machine: my physio got me onto this and it was a Godsend for reducing the constant pain. I suspect it was working on the near-CRPS component of my pain and helping rewire neural pathways.
* Meditation: good for pain control
* Hoka shoes: they look ridiculous, but the difference in knee impact even when walking is noticeable and they help you get gentle knee movement without more damage
* Topical ointments (Lawang oil, emu oil, Tui cream): I think these work by relaxing the muscles/joint. There is also some evidence the menthol in these helps distract you from pain and has positive neuroplasticity impacts
* Stretching: as for above
* Hot baths/showers: as for above
* Fish oil: not sure about this one, but I continue to take it
* Losing the triathlon obsession: this took almost three years, but once I started getting some decent pain reduction, that became far more important than my need to race again. In fact, it made me realise how stupidly obsessed I’d become with the sport.
* PRP injections: I’m sure these helped, but were not the silver bullet
* Fly-fishing: the gentle walking with frequent stopping seemed to agree with my knees, as did being away from a desk, being in a nice outdoor environment, and wading in cool water
Weird things that worked
* Acupuncture: no idea why this works, but my Chinese medicine guy put the needles in my elbows as apparently that opens up the healing channels in the knees. I also meditate and relax a bit during these 30-45 minute sessions so maybe that is the thing?
* Neuroplasticity exercises: have a look at this and this. These indicate that you don’t have to just “manage” (i.e. live with) your pain, but can beat it my rewiring the CNS. I set up a little animation in Powerpoint which showed the pain centres in my brain shrinking, and it definitely had a positive effect.
* Backballs: these are self-massaging balls provided by my physio for your back which you lie on and they massage either side of the spine. I found there were some spots high up in my back which when massaged resulted in a noticeable reduction in knee pain. This could have been related to CRPS and changes in ganglia in the spine.
Richard, TriAgain, and others, I am a first time visitor. I have just finished reading through TriAgain's story, Dr. Kelsey's Book, and about 70% of the way through Richard's book and had a couple of questions.
ReplyDeleteI am in the early stage of trying to find an EoF and reduce some mild synovitis.
- Richard I know you went through several iterations to find an EoF, when you found the one that worked was it pain free all the time? Or did you have "sensations" like some mild feelings that wouldn't be described as pain? I find that when I walk even some short distances (3-7min) my patella might feel tight or I just have a heightened sense of awareness that it is moving.
- TriAgain and Richard you discuss synovitis and TriAgain you mentioned needing NSAIDS to get the swelling down before progressing forward. How long and which NSAIDS did you use? Also did you find that the PRP shot helped with the synovitis?
Thank you both for your help
I often had odd sensations when I walked, but yes, I wouldn't characterize them as pain. I tried to stay in a pain-free zone. On the anti-inflammatories, I don't know exactly what I was prescribed; I was in Hong Kong at the time and the name of the drug wasn't familiar to me. Whatever it was, it didn't work that well anyway.
DeleteHi John
ReplyDeleteIn my post above which Richard quotes, I stated anti-inflammatories were bad, but in hindsight, I was using the wrong type (over the counter Nurofen) and not taking them for long enough. Hence they did not seem to have a positive effect.
Eventually however, I went onto the prescription anti-inflam. Celebrex for about 5 months which I now think was an important step for me to get the inflammation under control and the pain down to a level where I could really figure out where my EoF was, and start strengthening my legs again.
I think if you are really, really careful you can get the inflammation under control without anti-inflams, but to be honest I just did not have the patience for that.
PRP shots did not seem to help me at all - I had 3 of them 5-6 weeks apart in both knees.
cheers
TriAgain,
DeleteThanks! I am going to try and get a prescription to Celebrex or the Voltaren gel, just to try and break the inflammation cycle.
I finished Richard's book and re-read your story on the transitions forum and had a couple follow up questions if you don't mind.
- Office situations: I know in your story you mention not pursuing leaving your job, was this still the case in the end? Did you have to avoid your knees being at 90 Degrees? and if so how did you solve that?
- Early on EoF and synovitis: Was your morning walks always 100% pain free in the beginning? Or did you just kind of notice overtime things looked slightly better so you kept with the routine?
- CRPS insights: Any recommendations on some early central nervous system rewiring? Similar to your case I have the burning sensation, which I can tell at times is related to inflammation, but I also noticed that other times it made no sense. Recently I was laying in bed and noticed that it felt like my inner quads (VMOs) were displaying the same burning / tingling sensation when a blanket touched them, but not near the patella, more about half way up my leg. It was at this point I knew I was being hyper sensitive or something. And luckily it was later that week I came across your discussion on CRPS, and since have been able to convince myself (I guess this is CNS rewiring) that when I feel a blanket hit my inner tight this is a normal non-pain sensation. So far so good, but I still have these sensation on the lateral side of my legs that does extend from the knee and patella area. So it is challenging to distinguish between a pain signal and a hyper sensitive signal. Any insights into this is appreciate.
Again thanks for your help!
Hi John, re your questions:
Delete1. I never left my office job. I put some boxes under my table to i could sit with my feet on them & my legs straight. I still do this.
2. My morning walks were never pain-free, and even now I still feel some vague sensations in my knees most mornings (whether this is physical or mental is another question!). But they are much better now than when I started my little walks 6yrs ago. My recovery was confounded by the fact that every now & then i'd try something resembling my old life (e.g. a bike ride) and go backwards.
3. The CRPS thing is really a mystery to me. The pain specialist thought I was in the early stages of it, but I'm not sure. However, I definitely got sensations elsewhere in the muscles above and below the patella. Was it CRPS, or was it just that the inflammation in the synovium was so bad, I was getting referred sensations? I don't know. The whole experience definitely increased my pain sensitivity however.
TriAgain,
DeleteThanks for all your help. Glad to know the box under the desk is a common tactic. Enjoy the new MTB!
Hi Tri Again, what did you do to rebuild the quads? Did you find rebuilding the quads helped?
ReplyDeleteHi James
DeleteThis issue was (still is) a bit of a double-edged sword for me. I think rebuilding the quads definitely helped improve my function and took some 'pressure'off my knee joints, but I probably got into it too early, which extended my recovery.
Although I had stupidly skinny legs before all this started, they were strong as I cycled 200km+ and ran 30+km per week. but I never did any specific leg/core/hip/glute strengthening work which in hindsight probably led to my knee meltdown.
After the synovial inflammation started, I found lighter repetitive stuff (like cycling or running or even kicking while swimming) was actually worse for my knees than short intense stuff like weights. But some leg exercises were terrible - specifically normal squats & seated leg extensions.
So the 2 exercises that really helped build my quad strength without causing major setbacks (though they still created some pain) were Sissy Squats (body weight only) but with my forearms against a frame for support/balance, and kettle-bell swings, starting with kettles of 8kg and working up to 20kg. 3x10 reps of each as part of an intense little 22min exercise circuit which I designed to maintain some fitness & sanity!
I'm now back to some more regular cycling (3 rides/week of 35-80mins) but not entirely pain free. I doubt I'll ever get back to my Half-Ironman type stuff, but that's ok, life moves on.
My pain now is more of the chondromalacia type (sharp pain right under the kneecap with certain movements) which is far easier to live with than the synovial pain (constant burning/aching/stiffness).
Oh, and I pick up a new Full suspension mountain bike today. I've found that breaking bones is much easier to deal with than synovial inflammation!
Hi all,
ReplyDeleteA few thoughts from me on the thread above though I am only 2 months into a proper program (after many months of traditional physio quad strengthening, etc.).
1. On the EoF, I also started where even walking 2-3 min caused my knees to throw off signals. Taking Richard's advice, I went very slowly at first and have been listening carefully to my knees to determine what are "uh oh" signals and what seem to be "okay" signals that seem to be part of healing/processing. I am now up to 10-12 min that seems to be pain free within my EoF though slow and totally flat (I have just had a setback that I think was from doing more incline/decline).
2. I was on an oral anti-inflammatory for a month plus and it didnt seem to do much to me. The huge impact for me has come from the topical NSAID - Voltaren gel. If I slap that stuff on my knees the pain disappears for some hours. However, I use it very carefully as I believe in Richard's notion that "pain is data." I cant figure out if what I am doing every day is pushing me too far if I cant hear the pain signals coming from the knees (to be clear, after 6 hours the Voltaren wears off so if I pushed too far then I am in trouble then). But I will often use it if I already have the data already (yesterday for example I had a pain spike from a flare up) to help manage the pain and emotional burden of a flare up.
My unusual aspect of this I am still trying to figure out is that I have issues along the side of my leg and hip that seem to be more resistant than my front of knee pain. Im pretty sure its an IT Band issue but its not clear if its directly related to the PFPS or is indendependent and may be contributing to the PFPS.
Hope your journeys with this go okay in the coming days.
C
Oliver / C,
DeleteThank you for sharing, I have read a couple of your other comments as well. I too am in the early stages of trying to fix my knee problems with REAL rest / EoF. Glad to hear about the Voltaren, it is on my agenda to get a prescription in order to reduce the synovitis.
I would be interested in knowing your symptoms for your knee pain especially along the side of your leg as this is very similar to mine (in addition to the usual PF symptoms and AKP). Also would like to know how you determine what are: "uh oh" signals and what seem to be "okay".
For my ITBS like symptoms I notice a "burning" / tingling sensation especially on the lateral side of my left leg. It can start near the patella, but also near the traditional area of ITBS on the lateral side of the knee and up a few more inches along the IT band / lateral quad. In the past I convinced myself that this was all ITBS, however with the recent addition of AKP plus mild swelling has led me to these sites and more convinced of the Dr. Dye concepts of homeostasis and the strong concurrence with synovitis.
I have a host of other questions as well. I don't want to overdue it on Richard's blog unless he doesn't mind. Are you a member on kneeguru.co.uk?
Here in Australia, we can get a double-strength Voltaren gel called Oesteo Gel 12 Hourly. I founds this really helps settle a bad flare, while the regular Voltaren does absolutely nothing.
DeleteI think the real 'uh oh' symptom is that burning/tingling sensation. I still get some stiffness & pain, but thankfully that burn/tingle (which I think is the real clue that your synovium is terrible inflamed) is largely gone.
The medical experts seem to have no understanding of the importance of that symptom (except Dr Dye).
In fact none of the experts I saw asked any questions about the 'type' of pain. They all seem to think that knee pain is just knee pain, and is all about cartilage and bone. It's a dismal situation really. Thank Christ I found Dr Dye's info!
John,
DeleteI'm happy to share some thoughts. As I mentioned, I am early in the journey so am far from figuring this all out, but hopefully some of things I am learning may help. I'm not on kneeguru. Any advice on how to best engage there?
In terms of how I think about pain signals, I have 4 categories:
1. Fullness - This is generally a bad sign in any form unless it seems very faint. I have read others describing this as swelling and usually is followed by increased pain and stiffness in various areas around the knee for me.
2. Stabbing - Also always bad. Fortunately generally dont have this these days.
3. Burning - The "uh oh" version tends to be pervasive and prolonged, eg. feel it in the thigh as well as knee and it hangs around. The "seems okay" is when there are little pockets of burning that fade relatively quickly.
4. Aching - Same dynamic as with burning. Prolonged and more intense is tough while some faint and fleeting aching seems to be okay and almost feels more like normal aches after working a part of your body.
Im still figuring out the whole side of leg phenomenon. For a while the worst pain was on the front of my knees. But that has been largely absent for a few weeks now and the hip and side are more intense and persistent during flare ups. I would have thought that the pain at the side of the knee would come after fullness and swelling in the knee, but strangely (at least in terms of what I can perceive) I usually feel the side first and then feel fullness in the knee later. It may just be the delay in nerves getting info to the brain and the dynamic truly is that I overdo it, which leads to swelling in the knee, which puts pressure on the ITB and sends pain up the side.
Hope that helps a bit and good luck with your plan. I'd be happy to share other thoughts either here or in another forum.
One other random tip - I carry crutches around when I go out. These help with my plan to not do stairs until I have expanded my EoF and it helpfully sends a signal to people in the world that my legs are not well so they can be helpful and I dont feel any pressure to walk faster or up things that aren't in my plan.
Cheers,
Oliver
Awesome feedback TriAgain. I'm from New Zealand and 32 years old. Really struggling with my knee and rebuilding the quads. Had surgery for mild anterior pain. Worst mistake ever. He trimmed Hoffas fat pad and plica and did a microfracture on my patella. This was a year ago. I feel I'm getting worse with pain through the joint now. I've been in contact with Dr Dye and he thinks there is something he can do to help. Did you go see him?
ReplyDeleteAh NZ - my favourite country in the world! I try to go there fly-fishing at least once a year (already been twice this year). Usually stay around Queenstown/Gore/Dunedin.
DeleteYes, knee surgery is the start of many people's problems. My meltdown started after I has a piece of torn meniscus removed, but in hindsight I think the trouble was coming anyway. But perhaps the surgery made it more intense?
I did not see Dr Dye, just read a lot of his stuff/watched his videos online about PFPS which basically showed most of his patients have a course of anti-inflams, and follow the EoF regime.
I saw many 'experts' here before I found the Dr Dye info and one of them was talking patella microfracture, but thankfully my local OS (who trimmed my meniscus) advised against any surgery for PFPS. He also admitted the OS profession was very much in the dark about PFPS - which is a worry since Dr Dye has been working on it for 15+ yrs.
TriAgain,
ReplyDeleteyou mentioned icing among the bad things. Why is that?
It sounds like Dr. Dye is a fan of icing, so I would like to try it myself. So far, I have just done it intermittently, never in a regular manner, because I felt that it did nothing for the pain long term. It number the area for a short while, but after 10-20 minutes the burning was back.
Regarding what worked you mention PRP injections. My OS proposed these to me, despite the fact that there's not much research for PFS, so I was looking from real life experiences from people with PFS who did it.
Thanks.
Hi Mante
DeleteWhen my pain was at it's worst, icing did not seem to do much & I also read over-icing can lead to CRPS. But as my knees got better (on Celebrex) icing seemed to have a more positive effect & I use it now if I over-do things, though that is more to calm chondromalacia pain rather then PFPS pain. At the time I thought the PRP injections helped a little, bit in hindsight I'm not so sure.
Hi everyone and thanks for the insightful and researched explanations, Richard!
ReplyDeleteThis is kind of an obvious question in that I think I agree with you about knee taping( I felt at times it masked the real condition of my knee) Ive also been dealing with Chondromallacia stemming from a knee injury that I sustained about a year ago.
But I wonder if you can expand on why knee taping is under the "bad" category. Thank you so much for this blog and your book!
This question was for TriAgain, I guess I got confuses! Thanks! Maria
DeleteHi tri again, so I've just been to see Dr Dye in SF. He is disgusted at what my surgeon has done to my knee and thinks I should sue him. If only I was from the USA. Anyway, moving forward, he said more surgery is the last thing I need and prescribed me some nerve calming medication and told me to stay within my EOF. Which is so small it's not funny. My bone scan was one of the brightest patellas he's seen and is going to be a real challenge to get it back to normal. I'm satisfied with the diagnosis and going to give it every chance to heal. He said it could take 18 or more months. Also got a kenalog shot. Will keep you posted
ReplyDeleteHi! I would love to know how your journey has been? Just coming to the blog now and I have grade 3 chondromalacia from a sports injury I sustained 3 years ago. Have loved with a sharp pain under the knee cap for all this time when going up and down stairs. Wouldn’t dare run on it but resumed working out and heavy lifting as per physios advice. Now know that probably made things worse! Any help would be greatly appreciated
Delete